Project Description

Mackenzie’s Story

Hi, my name is Mackenzie Boswell and I am 16 months old – born September 13, 2012 at 9 lbs 14 oz. My first seizure was at two months old, shortly after receiving shots at a routine check-up. My mommy and daddy held me as they waited for the EMT. I had stopped breathing and was non responsive by the time they had arrived. I was sent home from the hospital and was told this would probably not happen again, but it did…many times again, over and over. I was having 15-20 seizures a week and slept most of the time due to rescue medicines.

After months of hospitalizations and tests, I was sent to MUSC (Medical University of South Carolina), where I was diagnosed with DRAVET SYNDROME! My parents, scared to death, did a lot of research and started my early intervention. I receive therapy three times a week and require a lot of medication. I have limitations with heat sensitivity and I have overactive brain activity. My family received a lot of my medical equipment (cooling vest, Emfit monitor, and thermometer) through TRUMC, and it has truly been a blessing. Though I am delayed physically and developmentally, I live my life to the fullest. My parents and three siblings Kyle, Leigha and Tyler, make each day fun and full of adventure, helping me to grow and get stronger.

My seizures are down to 1-2 a week and I’m reaching goals daily. My neurologist Addie, is amazing and works carefully with my parents to make sure we are doing everything possible to help me live a long happy life.